Dan Roberts. This Month. International Low Vision Support Group NEWSLETTER. In This Issue 1 This Month. 2-6 Latest News

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1 In This Issue 1 This Month 2-6 Latest News Macula Complete from Biosyntrx A total health supplement for the eyes and body Call for information: The ILVSG is sponsored by MD Foundation ILVSG TeleSupport is sponsored by Biosyntrx, Inc. and Genentetech International Low Vision Support Group NEWSLETTER Volume 8, Issue 11 - November This Month Our November presentation is an edited recording of a seminar published online by Hadley School for the Blind and specially selected for our support group. To quote the seminar's introduction, "Your vision may not be what it was but you are not blind. Some days are better than others, and you are always confronted with different visual challenges. To make things worse, your friends and family members do not quite understand that visual abilities range widely from perfect 20/20 vision to total blindness." We have all encountered the same scenario. We casually point out something in our visual field, and someone says, How did you see that? In my case, it was a deer standing on the side of the road. My wife, Chris, still regrets having asked that question, and she is as educated as I am about how low vision people see. It s hard, though, to understand unless you experience it from the inside out, as we do. Our guest speaker, Bryan Gerritsen, CLVT, addresses those and other issues in our program this month. You may have heard some of it before, but I think you will agree that such information bears repeating. 1 Dan Roberts

2 Riding the AMD Roller Coaster Why do we see on some days worse than on others? Gradual vision loss is to be expected with age-related macular degeneration (AMD). Even though it is expected, however, slow deterioration of our view of the world can cause fear, depression, and chronic stress in those of us who must constantly deal with it. To compound the emotional response, we can become overlysensitive to changes in our already compromised vision. We might think that every visual anomaly is a sign of further degeneration of our retina, but such is not always the case. In addition to the unfortunate normal course of the disease, several factors can cause our vision to diminish. These conditions are usually treatable, or at least manageable, after which our vision may improve. In other words, they do not cause permanent harm to the retina. If, however, vision does not improve when things return to normal, and if we see new symptoms like dim spots or distortion, that s when we need to call our eye specialist. So, unless changes in our eyesight are persistent and severe, complete exams are necessary no more often than every 6-12 months. For that matter, the eye doctor s use of a slit lamp, plus the bright light flashes from fundus photos, can actually cause damage to the photoreceptor cells if used frequently over time. OCT scans can be done with little risk, but, without additional information from the photos and slit lamp exams (or better yet, use of a nonmydriatic camera), those alone would be of little value to a person with dry AMD. Visual changes are more noticeable to us than they are to people with normal vision. We are walking closer to the edge of the cliff, so it doesn t take much to topple us over. We are also more aware, thus more concerned, about losing our vision. Simple things like going to an unfamiliar place or waking up to a cloudy day, can diminish our visual perception and cause us undue concern. 2

3 Lighting We see worse on a cloudy day than on a sunny day. On the other hand, we see poorly on a sunny day if we encounter glare. The kinds of task lamps and ambient lighting in our homes can also affect our vision. To maximize our vision, we need to learn about proper lenses and lighting instruments. Emotions Emotional stress can raise blood pressure and increase adrenaline levels, both of which are risk factors for retinal disease. Hormones Hormonal changes, such as during pregnancy or menopause, raises levels of glucocorticoids, which have been linked to central vision loss. Sleep A poor night s sleep cuts short the visual cycle, during which the sight cells are allowed to recover from the effects of daylight. General health Even a simple cold can lower resistance levels and decrease the effectiveness of the immune system. And to compound the problem, side effects of certain medications can decrease visual acuity. Environment We become accustomed to our normal environment, to the extent that we often use our memories more than our eyesight to get around. Then, when we make a trip to an unfamiliar place, memory cannot serve us, forcing us to remember that our vision is not as good as it used to be. 3

4 Other ophthalmic conditions Dry eye, cataract, inflammation, or infection can also deteriorate our eyesight. We need to consider all possible reasons for our our changing vision. It may be something that can be corrected. And we must always consider the chance that an improved spectacle prescription might still help us see better. Fear, depression, and stress are normal reactions as our eyesight diminishes, but it is helpful for us to know that some vision loss is only temporary. We must also keep in mind that, even as our sight cells gradually cease to function from the effects of the disease, AMD alone will never affect more than the center 35% of our visual field. We have an amazing ability to adapt, and almost all of our normal daily activities can still be accomplished in spite of vision loss. Remembering this, and staying in touch with good information and support, will go a long way in helping us ride the AMD roller coaster. I Can t See What You re Saying When the link breaks between sight and sound Why do we visually impaired people also seem to have trouble understanding speech? Do we really need people to speak louder to us, as they are often prone to do? The answer may come from recent findings at the University of Utah. A study reported in the journal PLOS ONE has shown that a phenomenon called the McGurk effect may be the cause. Scottish cognitive psychologist Harry McGurk first identified a link between hearing and vision in the 1970s. And now, University of Utah bioengineers have pinned the cause on the way our brains process sound. By recording and analyzing activity in the temporal cortex, the researchers found that much of what we understand is perceived more through our eyes than through our ears. 4

5 This discovery may be of value to treatment of conditions such as dyslexia, and it may help scientists better understand how speech is developed in infants. But of more immediate importance to us is that it helps explain why we seem to have increased difficulty understanding speech as our vision declines. When normally-sighted people converse in person, much of what they understand is visual. In other words, they are reading lips. Take away the visual input, however, and they may as well be talking on the telephone. And we have all experienced difficulty trying to relay information on the phone. Without vision, for example, the word bat could very well be heard as vat or that. That s why NATO and Western Union developed phonetic alphabets for spelling words aurally (Alpha, Beta, Charlie, etc.). The bottom line is, low vision people are not necessarily hard of hearing. It would be more correct to say we are phoneticallychallenged. That places the responsibility on the speaker, who should enunciate clearly while speaking at an appropriate volume and slightly slower speed. I can t see what you re saying now takes on another meaning, and we hope it will be understood by those with whom we converse. New Drug Effective in Treating Vitreous Traction Early treatment with a new drug called JETREA (formerly called ocriplasmin) has shown effectiveness in lessening the risk of macular pucker, macular hole, and vitreomacular traction (VMT). These conditions are caused by the tugging on the macula by the vitreous gel, which is attached to the retina at several points. As the vitreous shrinks with age, it puts tension on these adhesions. If the adhesion does not release spontaneously, the retinal tissue can be torn, and surgery is required to save vision. Until recently, vitreomacular adhesion (VMA) could not be prevented in its early stages. Now, however, the biopharmaceutical 5

6 company, ThromboGenics, has announced that a large retrospective review of VMA/VMT patients confirms that early treatment with JETREA may stop disease progression and lead to better visual function outcome. The announcement was made by Prof. Dr. Peter Stalmans, Department of Ophthalmology, University Hospitals Leuven, Belgium, at the recent EURETINA annual meeting of European Society of Retina Specialists in Hamburg. Dr. Patrik De Haes, CEO of ThromboGenics, said, We are pleased to see how the results highlight the opportunity for JETREA as an early treatment option for those patients who would normally only be observed. These new data and real life insights will help us to further educate the community about the risk of disease progression and the patient benefit of early treatment. One caveat has been offered by research team member Jeffrey S. Heier, M.D. In an article published online in January 2013 at Eyeworld.org, Dr. Heier said, Patients who are symptomatic for epiretinal membrane will not respond well. Epiretinal membrane is also caused by adhesion, but it is a larger, broader attachment, and patients with that condition are not likely to respond, according to Dr. Heier. ThromboGenics recently received approval from the UK s National Institute for Health and Care Excellence (NICE) for their product, recommending it as an innovative new treatment that should be reimbursed within the National Health Service in England and Wales. The hope is that the treatment will trickle down to doctors in the US and how they look at treating patients here with low vision due to symptomatic VMA. -- NEXT MONTH -- What s New in Nutrition? Ellen Troyer, M.T., M.A. returns to update us on the past year s developments in nutrition science. Her talk includes a clarification of the AREDS-2 results. 6

Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-5: News

Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-5: News In This Issue 1: This Month 2-5: News Eye & Body Complete from Biosyntrx Extra Strength AREDS-2 Multisupplement Call for information 800-688-6815 The ILVSG is sponsored by MD Foundation www.eyesight.org